Tag Archives: CD33

Come to the End

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IMG_0461IMG_0447IMG_0457The cursor blinks.  Waiting. Waiting for the words to come, to extract from the blur, to distill the thunder and wailing silence.

We are those people.  We have become strangers from even those who have known this road with us most intimately.  She is not yet gone but the memories, they flash in and burn.   Every step igniting shards of pain.  Beauty and joy, that with the awareness of their loss, pierces rather than delights.  Thoughts, uninvited barrage, come sailing past, slicing, blunt force.  I was teaching her the names of plants and she would yell out their names as we drove about – forsythia, I see forsythia, she exclaims. Red-tip Photinia gets blurted out over and over.  And there it is, a brutal mingling of what once brought joy and proclaimed life and growth is transferred into the category of no more and then the gaping expanse of emptiness where more names of plants were supposed to dwell.  But I wanted to teach her to crouch low and delight in the delicacies of moss, of tender fern, of trickling stream, to watch the light stream through trees, to stop and listen, to soak in life, to learn the secret of the bounty observation brings…

We have had rough times before, really really rough times.  There have distinct situations in which her life could have easily veered toward death, it was right there, standing at the threshold but never had it entered in.  To look at her is disorienting, to consider the severity of the situation keeps getting rejected and spit out over and over.  Dr. Cooper called in early evening.  I told him of the second guessing our decision that had already come, of the disbelief that she really is being over taken by her cancer, that there really is nothing to stop it this time.  I ask him again, are you sure, totally sure there is nothing for her, nothing?  Nothing.  There is nothing left.

This morning I thought, maybe there is something out there in the world, some new and wild way to tackle her beast, some new angle that can catch it unawares and strangle it at long last, extinguishing its mindless assault.  But no.  There are only the same grooved paths.  Therapy, primarily chemo, all to get to a transplant and she just had a transplant.  She just had THE transplant, the no holds-bar transplant, a full-conditioning volley of weaponry – if that didn’t work, there is at present nothing more under the sun that can cure.  And so the question rises, can we give her something to hold her, to simply keep her going?  But to what end?  And it’s not like this doesn’t come at its own cost.  The one possible goal was a CD123 CAR T-cell trial that is still in the works at CHOP (Children’s Hospital of Philadelphia), but it is months and months out.  And with Allistaire’s current heart function she wouldn’t qualify anyway.  And perhaps more than anything, the startling speed of this cancer’s progression makes nearly any novel therapy too late.  Her kidneys are suffering with a steadily rising creatinine level.  Her potassium and uric acid or rising due to tumor lysis.  And this rise in potassium, the unbalancing of electrolytes, could at any moment cause cardiac arrest.

Before we knew it, without intending to and without being able to yet utter the words out loud, we began to discuss what it will look like for her to die.  Does kidney failure hurt?  No, it would be peaceful.  As would her heart simply stopping, peaceful.  What a strange thing to hope for your child.  I do not want chloromas to overtake her body – they cause incredible pain and deformity.  No, it seems most compassionate to make way for some other finality.  I do not want her to bleed out.  We must keep giving her platelets.  But red blood?  It may come to the point that we simply don’t give her any more red blood and she will grow more and more tired and sleep and never wake up.

I cannot believe I am having to have this discussion.  I cannot believe the words entering my ears or coming from my tongue.  It sounds like logistics, some planning committee.  Hospice will meet you on Monday at noon.  PAC Team (Pediatric Advanced Care Team) will do this, Dr. Cooper will check on this…but there is this little girl, the nucleus of all these efforts, these considerations.  And while it all might sound callous and aloof, distant, I am confident of the sincere care for Allistaire in that room, especially that of Dr. Cooper and Dr. Bleakley, two doctors who have intimately walked this road with us, who have thought long and hard over Allistaire.  They are dear to me and I trust them.  I trust them because the are incredible brilliant people who have walked this road with families for many years, who understand the disease far, far more than most and who have known Allistaire as a real girl, not a med rec number, not a PET scan result or Flow Cytometry percentage.  And so with what very little time we have left with our girl, I will not go running after obscure options.  We have chosen to rest in the expertise of our doctors who are connected nationally and internationally with fellow physicians also working on AML.  They are a gift of great worth to us.  They honor us and honor Allistaire in their enduring work to care for children with cancer.

I am already incredibly tired.  I don’t want to leave her side.  I feel the tiny bones in her hands and the light passing across the tiny little peach-fuzz hairs on her cheeks, the long dark lashes and puffy eyelids.  I listen to her breathing and rub the warmth of her back, the delicate blades of bone.  And it all just hurts so bad.  Tonight is Friday night.  It’s always been Friday night pizza night and a movie. Sten and Solveig honor that tradition in Montana and we here in Seattle.  But tonight?  What is tonight?  Is it my last Friday night with Allistaire?  I gag at the thought. I long to throw up, to some how clamp my hands over my ears, to press my eyes closed tight and somehow make it all go away.  Can I just go back to a week ago?  Can I just undo this awful week?  Can we please not take this path?  I want to scream and scream and scream until my voice is gone.

When we sat with Allistaire on her bed and told her that we had met with the doctors and there was no medicine left, that she would die, we asked if there was anything she wanted to do.  “I want to go home,” she said.  And while we feel our resources for this situation are best here, we are taking her home for two days.  Two last days at home in Montana.  Time for the four of us to dwell in that home one last time altogether.  Time for our family to gather.  I don’t know how our hearts will bear up under it.  But we must live out each moment, each minute that amasses to become an hour, and hours days.  Yet we may really be down to days and I can’t stand the thought of it.  My body just shakes, rejecting that the child I gave life to I have to at last lay down and walk away from.

I must go to sleep.  In the morning I will pack for this brief visit home and she will get a transfusion of platelets and red blood to tide her over.

Thank you for your many messages of sorrow and love.  Thank you for your prayers.  Many of you have expressed a desire to help.  First please understand that our time with Allistaire is so short, we will really be keeping to ourselves and our immediate family, a few close friends.  At this point in time we ask that you don’t ask to come visit unless we have already communicated with you.  Please know this is no reflection on you, rather a need to be realistic with our finite time and emotional resource.

Another way to demonstrate your angst toward cancer, your sorrow over the loss of Allistaire’s fiesty bright sweet spirit in this world, your support of our family, is to give to OBLITERIDE.  I cannot tell you how brutal it was this morning to hear of amazing research underway in the lab that is no where near being ready for Allistaire.  While I rejoice at the advance of cancer research, it is too wickedly slow!  What heartbreak to know that while cures are underway, Allistaire’s body will have already ceased.  Please consider honoring Allistaire’s life by supporting me in funding cancer research at Fred Hutchinson Cancer Research Center through Obliteride.

Click HERE to donate.

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.” (1 Peter 5:8-11)

Blind Sided

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IMG_0434IMG_0435Blind sided.  Out of no where.  Everywhere bright sunlight, perfect blue skies, flashing radiant green leaves, bursting life.  Though my mind knew the possibility of what the scans would reveal, optimism actually seemed to fill my view and I am not prone to optimism.  I realized I had seen no change in her eye, nothing to show the march of cancer in her sinuses.  Wednesday morning I knew I would end that day knowing something profound.  And there seemed to be light on the horizon, it seemed within reach, for once a real genuine possibility that we might outrun this beast, at least for a time.  There was one dark blot.  The nurse practitioner on Tuesday had a very challenging time getting her marrow.  She poked Allistaire three times in the right hip, twice in the left and so little, so little came out.  “She bent my needle,” she told me.  As soon as I saw her I anticipated something being wrong; my hot flush validated.  Such a thing had only happened when she’d had disease.  But she couldn’t have disease in her marrow.  In an entire year of low-key chemo, she’d only had low level disease one time.  I never even thought to worry over her marrow.

Dark shadow suddenly overtook sun.  I had not heard the pounding of its horrible feet.  No awareness of its stench.  The speed with which it grabbed Allistaire…in a flash she went from her normal joyful little self, a bright sprite, a light, giddy blue eyes, a vibrancy…her face has already changed, her eyes puffy and the blue small slits full of pain.  She has done little more in the past 48 hours than sleep and call out, whimpering from pain in her arms, her legs, her head.  It hurts her to move, to shift from laying on one side to the other.  If she walks at all it is tentative and slow, pain, pain.  Gasping, gasping, mouth wide in horror, in shock, confusion.  What?  What is going on here?  My understanding fails me.  I could not comprehend the words…”there are two soft tissue masses in the left supraclavicular location…there are new hypermetabolic lymph nodes and lymph node clusters in the porta hepatis, retroperitoneum, and mesentery…there is diffuse increased FDG activity in the axial and proximal appendicular skeleton…the sinuses are clear.”  A snarling tearing, flesh from flesh.  No disease in the sinuses but, disease everywhere…in the short span of a month those cancer cells have been advancing, overtaking.  Oh my God, oh my God.

In the span of a moment, we are careening into black, the suffocating grip.  We had skirted this storm for so long, the black clouds, the sucking winds, an inertia ever threatening to draw us in and while it has always been with us, all these four years and five months, while it has remained in view, somehow, somehow we had evaded.  I called Sten…you and Solveig need to come.  Solveig arrived at 7am and Sten tonight.  We went to SCCA for Allistaire’s regularly scheduled Thursday morning labs.  When we left six hours later, as I cradled Allistaire’s great 20.7 kg of flesh, and was turning to go, I looked at Dawn, our long time nurse, the words caught in horror, “I don’t know if we’ll come back here…”  Oh God.  Oh God.

How could light and hope be extinguished in so short a time?  I began the day knowing there was probably nothing we could do for Allistaire; that there was probably no treatment that could cure her.  But still my heart clung to the hope that there might be something to hold her, to get her further down the road that somehow her life might intersect some new wonder of research, some new therapy that could somehow, somehow stop this ravaging.  I thought my challenge would be taking the girls to Disney Land and not crying the entire time.  But there was Jamie, the fellow.  “Her marrow has 9.5% disease.”  No wonder she’s in pain.  Her bones are filling with cancer.  In the course of time I learned that her chimerism had changed, now only 85% Sten and about 15% Allistaire, about 15% cancer.  How could this be? A week ago I was told her chimerism were 100% donor.  I could have never imagined this speed.  Her labs show rising uric acid and potassium, evidence of tumor lysis, of rapid cell turn over, of the multiplication of millions of the most fearsome of cancer cells; cancer cells that had some how thwarted the assaults of a nuclear blast worth of radiation, of over 25 rounds of chemo, genetically modified T-cells and the mis-matched cells of another.

All of sudden I realized…the good has already passed.  I have most likely already taken her to the park for the last time.  When was that?  When was the last time I followed behind her on her bike on the Burke Gilman?  When was the last time I tickled her until she cried out for me to stop, never wanting me to stop.  When did I last see her face look like her face, hear her unfettered laugh.  I feel myself going down, my own flesh ripped from bone and tendon, sinews tearing.  Agony.  How can this be?  How?  How could I have already lost so much?  But I didn’t even know!!!! I didn’t even know it was happening.  I thought there would be time, time.  And just like that – everything has changed.  Every action has always been in orientation to her survival, to her life going on, to sustaining.  And now it’s all been swept away.  It’s already gone.

I looked at the toilet seat covers.  I noted the handle to the door that I would never have touched with my bare hand.  I thought about her reading book laying on the table at Ron Don.  She’d come so far.  She was doing so well learning to read.  And now it was gone.  When was the last time she sounded out a word, read her short little stories?  She never even got to go back to school after she was discharged from the hospital because of her cold.  I won’t have to figure out how to home school her.  It won’t matter if other children in our town are not vaccinated.  They can no longer but her in harms way.  I won’t have to mourn that she can’t go in the water at Cliff Lake.  She won’t be there.  She won’t be there for my birthday.  She won’t be there for Obliteride.  She said to me this afternoon, she said, “I wish Obliteride was happening right now.  Why sweet girl?  Because there’s no medicine left for me.  And then the doctors would have money to find something for me.”  Aaaaaahhhhhhhhhh!  The flesh of my face contorts and my heart beats hard.  How will I get on my bike?  How will I ride those miles?  How can I not get on my bike?  How can I not ride and ride and ride and ride and never stop, never stop asking for more.  More.  We need more!

Dawn showed me the med list, wanting to know if there were any meds I wanted to stop giving her.  Because suddenly we don’t have the long view any more.  Suddenly everything I have done as a parent to push her, to care for her as a person who will grow into an adult, it all falls flat, out of place.  It no longer makes sense.  I hesitated.  How could I say no to any of those meds?  How can I yield?  How can I yield?  How can I hand her over?  But what does it look like to love her now?  I have for so, so long fought for her, defended her with all my might, been attentive to ever last detail.  How do I just walk away.  How do I just stand with arms at my sides at let it come for her?  We still haven’t met with the doctors to come up with a plan, but as the day progressed it became more and more clear that there is probably nothing to be done but make her comfortable.  I asked Dr. Wolfrey, what do you think?  I know you can’t tell me how long, I know you can’t predict, but you’ve been here a long time, you’ve seen a lot, what do you think?  She agreed that it had taken everyone by surprise, the change had come out of nowhere, there was no hint of its onslaught.  But given the rapid progression, she said probably no more than a month.  Maybe two weeks.  Maybe one.

Incomprehensible.  I literally don’t know how to comprehend.  I feel the immensity of this is more than my flesh knows how to allow in, to take into myself.  Though I have intentionally looked death in the eye over and over, have never turned away from its black looming form, despite holding the cold hands of my friends children, it remains a reality disparate, utterly apart from all I have known of this child who has only ever burst with life.

What I can tell you is that those close to me, dear to me, those whose beloveds have died, they long to be reunited with them.  And those that know Christ – their yearning has a specificity, a particular quality and dimension, a faint outline, their eyes keenly fixed on the shadow of what is promised, they have a yearning unlike anything they had previously known that draws them to the Lord, to call out with groaning for Christ to return, a desperation to leave this life and enter the next.  Mental assent to the concept of death and disease and sin is not enough.  One most know the gnawing of disease, the gaping hole of death, the ugly betrayal of sin in order to loosen the grip on this life, this world.

Ingrid Lyne’s sawed off head and foot were found Saturday afternoon in a recycling bin.  She was savagely murdered by the man she was dating.  She was a nurse at Swedish Hospital.  She was forty years old and the mother of three young girls.

On the same day that Ingrid was found, my friend’s brother-in-law jumped off an overpass in California.  He leaves behind his wife and sons.

A woman in our town suffering from postpartum psychosis, shot her husband in the back of the head, then her sixth month old baby before calling 911 and then shooting herself.

My friends have a box of all that remains of their little girls, ashes.

My sister-in-law grieves Jens’ body broken at the bottom of cliffs.

I have yelled ugly, belittling words at my children, the very children of my womb, the children I love.  I have harmed my husband and not made safe space for him, I have been guilty of immense selfishness and materialism and arrogance and gluttony and coveting.

My six year old little girl likely swept away, never to admire her hilarity again, to see the sweet compassion in her eyes, to rub her back at bed time, blow kisses…

And you ask me how I can groan for another life, for another world, for an altogether different sort of life?  How can I not?  How can I not scream with every raging cell of my body that children should not die, that depression should not destroy, that sin should not ravage?

The brutal unending brokenness of this life, this creation causes my eyes to rise, to lift up, to fix my gaze, my hopes on God.  Apart from hope of another world, another life, despair might likely dominate, or numbness or distraction.  God declares this of the life to come, “Now the dwelling of God is with men, and He will live with them.  They will be His people, and God Himself will be with them and be their God. He will wipe every tear from their eyes.  There will be no more death or mourning or crying or pain for the old older of things has passed away.”  (Revelation 21:3)  This hope enables my to look full into the face of this agony, this dark, impending death, horrific violence, utter despair, and see the promise of more, of different, of other and my longing grows.

The bulk of my hope lies in a world yet unseen, in a reality promised but not yet experienced.  The irony is that this assurance of God fulfilling all His promises, of redeeming all our sorrows, of all the days of my life being of purpose and enveloped in a vast and beautiful plan, of putting away death and sin for eternity, this subsequent loosened grip on this life, it frees me up, it gives me buoyancy to more fully dwell here, now, intently, without having to turn away.  I don’t value this world and this life less because my eyes are fixed on the world to come.  No, I am freed up to relish and delight and claim beauty and good where ever it is to be found in this life and in turn to know that it is just a whisper of what is to come.

It is mystery and paradox but my very love of sunlight, of craggy rock and star scattered night, of cool scent of sage, of birdsong, of cytoplasm and nucleotides and whirling atoms, of ocean and whale and storm and tectonic plate, of magnetic pole and bursting suns and waves of the electromagnetic spectrum – they all call out – they all declare and sing and sing of God and I treasure them all and I am giddy before them and they point endlessly to the might and glory of my God. I don’t love the earth less because of my belief in God – I love it more, more, more for it is all His, it is all the expression of His wonder.  And if this is how I may treasure that which does not have spirit, how much more my fellow beings, crafted of but dust, but made alive by the breath of God?

Time is short and I must go.  My words fall short as I try to grasp for words to put some beginnings of dimension and color to this mystery – this agonizing that comes from the thought that we may really soon lose Allistaire and yet – this brutality is all interwoven, caught up in realities far vaster, hopes that sustain the heart that tastes death.

The day has begun and Allistaire is already calling out in pain, pain in her legs and her first dose of morphine.  I have already emailed Dr. Cooper to ask about another CD33 targeting drug (a sort of next generation Mylotarg drug) in clinical trial for adults – could it be an option for Allistaire?  Could we get it on a compassionate use basis?  And you know what – that drug – it comes from a sea hare, from the symbiotic relationship it has with the algae it eats, from some molecule that is formed in its gut.  So you see, even in the midst of the most brutal ravaging, there He is, there is God not waiting to give us life only in the life to come, but in the most wondrous of ways, declaring, I am here!  Look how I love you!  Look how I have gone before you and provided for you.  Look how I have compassion on your suffering.  Look low here and now and behold that I am God – be in awe – see what I have made and if you think this is good, well just wait and see, this is only a tiny smattering of the glory to come.  Come Lord come!!!!!

We meet with Dr. Cooper and Dr. Bleakley at 11am today.

 

Traction

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IMG_1475IMG_1286(Top pic: Allistaire 14 days after the first of three doses of Mylotarg; Bottom Pic: The day before the first dose of Mylotarg)

In late August of this year, eleven native Christian missionaries near the town of Aleppo, Syria were killed for their refusal to deny Christ and return to Islam.  Three were crucified and eight were beheaded after the women were publicly raped.  According to villagers who witnessed this, one woman reportedly “looked up and seemed to be almost smiling as she said, ‘Jesus!”

Perhaps you don’t believe this report.  I immediately thought of Stephen who stood up for what he believed, that Jesus Christ was the prophet God had promised to His people Israel and to Moses.  In the face of his life being threatened, he refused to back down.

Acts 7:54-59:  “When the members of the Sanhedrin heard this, they were furious and gnashed their teeth at him. But Stephen, full of the Holy Spirit, looked up to heaven and saw the glory of God, and Jesus standing at the right hand of God. “Look,” he said, “I see heaven open and the Son of Man standing at the right hand of God.” At this they covered their ears and, yelling at the top of their voices, they all rushed at him, dragged him out of the city and began to stone him. Meanwhile, the witnesses laid their coats at the feet of a young man named Saul.  While they were stoning him, Stephen prayed, “Lord Jesus, receive my spirit.”  Then he fell on his knees and cried out, “Lord, do not hold this sin against them.” When he had said this, he fell asleep.”

When I went to wake her, a stream of blackish blood had dried across her cheek as she slept.  Sometimes I would hold up my hand to block the right side of her face from my view, so that I could only see her left, so I could see the girl I recognized, my sweet Allistaire.  She would just cry and cry holding her little hand up to her right cheek.  She couldn’t close her jaw on that side, her teeth wouldn’t fit together, making eating difficult and painful.  Her eye was so bulged out and full of trapped fluid that I could barely see her iris.  I gave her as much oxycodone as the doctor allowed and let her sleep except for brief periods of eating.  I sat on the bed in the dark, only the glow of the computer screen visible.

Outside the world was bursting with life on beautiful fall days.  We were trapped in ever-deepening darkness.

At some point in the span of these brutal days, it suddenly occurred to me, the thought seemingly out of the blue…I am not afraid.  I am not afraid of Allistaire dying.  I am not afraid of the many awful ways situations in my life may turn out.  The realization shocked me but as the words formed in my mind, my deeper self affirmed, fear no longer has me caught by the throat.  I am released.  I have been freed from its strangling grip.

When I read about the woman, already raped, about to be beheaded, the woman who seemed to smile as she said, “Jesus!”…I nodded my head, yes, yes I can see how such a thing could be true.

People say to me all the time – ALL the time – I don’t know how you do this.  Behind such an astonished statement is the desperate hope that we will never be forced to endure such realities.  We look at our weak small selves and proclaim – I could NEVER do that!  Because we don’t want to, because we have created some sort of system in our mind, some law of the universe we desperately hope is true, that if I can’t endure something, I won’t have to right?  But the truth is – the world IS full of suffering and human beings have had to endure terrors far beyond their little girl having cancer and having to watch a tumor gnaw away her face.  We are resilient beings.  You do what you have to do.  We are overcomers and we crave such stories, it is core to our humanity.

With tenacity, with grit, with determination, with perseverance, perhaps with sheer rage, I can make it through this.  I can make it through, if even the worst comes to Allistaire.  But.  This is human effort.  This is what my flesh can muster up.

The paradox, the absolute resplendent beauty and otherness of God says, “No.  No Jai.  I will use these circumstances with Allistaire to tear you limb from limb.  I will allow you to be decimated.  I will crush you so that you gasp for breath.  I will gouge at your heart.  You will know anguish and darkness.  Panic and terror.  And at long last when I have laid you to waste your faint heart will groan and I will incline My ear to you.  And beyond all comprehension you will come to know a strength you could not have imagined.  You will know a peace that surpasses understanding.  You will drink of Me and not grow faint.  You will soar on wings like eagles.”  These used to be just pretty words.  Words I believed, but pretty little words you pat on the head and paint in some scrolly font and frame on the bathroom wall.

How many times have I in desperation, with tears said to Allistaire’s various doctors, “but I don’t know how to let her go.  I don’t know how to take her home to die.”  As I sat in the darkened room on the very grimmest of any days in this long fight, I felt rest.  I am not afraid.  Oh, I am radically sad, to my very core, but fear no longer saturates, suffocates.  It comes to this, at long last I believe the Lord will actually provide all that I need in the moment – not only to endure but to experience Him turning darkness into light, not because He changes my circumstances, not because He ends my sorrow, but because finally I have tasted of Emmanuel – the truth of “God with me” has sunk yet deeper into my very marrow.  I once read a book as a teenager, Abide In Christ, by Andrew Murray.  I abide in Christ as Christ abides in me.  Sounds so simple yet mystery.  I have come to believe – believe – how small a word, how utterly insufficient – nevertheless, I have come to believe that whatever my need, the Lord will meet me in that moment, in that circumstance, and supply in abundance.

Could I endure being publicly raped?  Could I say yes to Christ knowing if I denied Him they would stop torturing my child?  Could I bow to the blade that would soon decapitate and find joy in that very moment?  Can I know peace and even joy in the midst of incomprehensible sorrow should Allistaire draw her last breath?  I do not claim to know how the grace will come but I trust that God will be faithful to meet me fully in each moment and supply all I need to keep seeking His face – that even in the very darkest days He can make my face radiant.

It was odd to sense such peace in face of the thought of Allistaire’s death on the very threshold of the coming chemo we hoped would turn things around.  In the very span of days that the Lord seemed to remove the last stranglehold of fearing her death, there was hope that there might still be some way through.  The peace was unrelated to the hope of chemo working.  The peace lay coupled with death, yet, like burrowing through dark soil and rock, while you hope one day to come out into the light , you count as victory any forward motion.

It has been 22 days since Allistaire began chemo for this round and 16 days since her first dose of Mylotarg.  Night and day.  You can now hardly tell there is anything off with her eye.  You have to be looking for it to see it.  The bleeding has stopped, her sinuses no longer run, her cheek and eye seem normal in size, her double vision is gone, the pain is completely gone.  All that remains is numbness on the side of her nose and upper lip and an occasional expression with her eye that is not completely normal.  She is happy and full of joy and giddiness.  You would not know she had cancer unless you knew she had cancer.

Today I stood in front of two large computer screens with the radiologist, who took considerable time to explain the images and measurements from yesterday’s brain MRI.  The actual dimensions of both “granulocytic sarcomas,” or chloromas or tumors, have diminished only somewhat.  The larger tumor on the right is at its widest still just over 4cm.  The most impressive impact of the chemo is not best understood by measurements in centimeters but the images – wow – the vast majority of the inside of the tumor shows up black on the image – dead cells.  There is really only a “thin residual enhancing rim of the cellular tumor.”  This is most dramatically seen on the tumor on her right side in the “maxillary sinus,” where it no longer pushes up on the orbit/eye and no longer pushes in on her sinuses.  The radiologist informally said it looks like about 80% of the bulk is gone.  I won’t lie, it was pretty disturbing seeing the images from the September 29th MRI.  Every last bit of space was full of leukemia and it clearly had nowhere to go except into her bones.  Thank you God.  Thank you Mylotarg.

Speaking of Mylotarg, Allistaire and I, along with Solveig who we joyfully had with us over her fall break, had the honor and joy of meeting Dr. Irwin Bernstein.  He is both a lead researcher at Fred Hutchinson Cancer Research Center and Chief of the Division of Hematology/Oncology and Bone Marrow Transplant at Seattle Children’s Hospital.  This is THE guy who invented Mylotarg – okay, it was his lab that created this monoclonal antibody drug conjugate that targets CD33 and then unleashes the cytotoxic power of calicheamicin on leukemia cells!  It was just so incredible getting to sit down with him – this man who for decades has worked on cancer research and whose perseverance, brilliance and team work intersected our lives to literally save Allistaire!  I attempted to fully overwhelm him with my gratitude that he and the other folks in his lab would be spurred on!  Hopefully seeing Allistaire’s sweet face and a gruesome picture of her face pre-Mylotarg gave him encouragement that what he does has real, tangible impact!  Ever wonder why I am such a promoter of Fred Hutch?  This is just one example of why.  So much of what benefits Allistaire as she is treated at Seattle Children’s comes from the incredible science being done at Fred Hutch!

The other thrilling development is that last week I met with Dr. Cooper, Allistaire’s primary oncologist, Dr. Law, her cardiologist and head of the heart failure and transplant team and Dr. Bleakley, our primary bone marrow transplant doctor.  Also present in support were Jeff and Karen on the PAC (Pediatric Advanced Care) team and our social worker, Megan.  While I will hold off in explaining the details, in short, the outcome of the meeting was an agreement to aim toward getting Allistaire to transplant as fast as possible.  With Allistaire’s ejection fraction on her last echo being 45, she has finally reached the threshold for transplant.  There is a lot more to say on this subject but for now, the point is, we are now in a position with Allistaire’s cardiac function to consider transplant!  I can hardly believe she has made it this far.  Dr. Bleakley proposed a very interesting transplant option that I initially wanted to spit right out of my mouth in rejection – however, after more information and consideration, it seems it may be an incredible option for Allistaire.  A number of tests are underway to  determine our options moving forward.  The most immediate question is what chemo(s) to give Allistaire in the coming, and hopefully last, round of chemo before transplant.  While Mylotarg has been extremely successful for Allistaire (at least based on the brain MRI – we still have to see what’s in her marrow in the upcoming biopsy) it has in the past, when given in one large dose, been associated with VOD (Veno Occlusive Disease) during transplant.  Dr. Cooper is exploring chemo options available for Allistaire.

A month ago, two months ago, I just felt flat tired, worn down utterly.  Allistaire’s great response to Mylotarg along with the possibility of a bone marrow transplant in the relatively near future has created traction and, man, just gives you something to aim for instead of feeling like you’re stuck in an never-ending circle.  This week marks one full year since this most recent relapse.  We have lived in this wee hotel-like room at Ron Don for one year.  Had you told me on October 24th 2014, that I would still be living away from home a whole year later, without having even gotten to transplant yet – well, I could never have imagined how I would get through all that has transpired.  The Lord knows what is to come.  Hem me in Lord, behind and before.

We just have so much to be thankful for.  Thank you to the mom and daughter who gave Allistaire the obnoxiously large Frozen balloon and the purple hippo – just because – because you cared though you never met her.  Thank you to Dr. Nixon, the radiologist, who took the time to answer my myriad of questions, thank you to the person who gave me that Trader Joe’s card so I could buy lunch and dinner and dried strawberries that Allistaire likes after her yucky medicines.  Thank you to the unknown person who sent me that Kari Jobe CD – I hit “4” over and over and sing out loud in my car, “I lift my eyes, I lift my eyes.  Maker of the heavens.  Keeper of my heart!!!!”  Thank you to my parents who just keep helping to take care of Allistaire and showing me so much love.  Thank you dear friends who have provided us with airline credit and tickets so Allistaire and I can go home and Solveig can be here with us and Sten can fly out to see us and miss less work than if he drove.  Thank you to my in-laws who help us so much with Solveig.  Thank you to my sweet husband who works hard at his job and keeps things up so well at home – including my ridiculous plant collection, far too populated with ferns.  Thank you to so many of you who have given financially to cancer research.  Thank you, thank you for so many of you who have fallen on your knees before our Lord, who have wept on our behalf.

“Do not look at what you do not have, at what will be loss, rather, be expectant, be on the look out for what I will do, for the bounty I will bring,” the Lord softly declared to me on that gray December morning in 2011.  Oh Father.  You have been faithful, so faithful.  You have become more dear to me than I could have imagined.  You have ravaged me and shocked me at your ways.  Your words have taken on flesh and color where once they were just dry bones.  You, Oh Lord, have been good to me.  How I love you.  I prayed to you on so many first stars in the night sky, “Father, should one day something happen in my life that threatens to cause me to deny you, to leave you, hold me close, do not let me go.”  You have heard my cry.  IMG_1289 IMG_1292 IMG_1294 IMG_1296 IMG_1300 IMG_1312 IMG_1318 IMG_1319 IMG_1322 IMG_1324 IMG_1330 IMG_1356 IMG_1366 IMG_1371 IMG_1377 IMG_1392 IMG_1411 IMG_1432 IMG_1434 IMG_1436 IMG_1442 IMG_1450IMG_1477IMG_1488IMG_1493IMG_1505

Lead Bellied Clouds

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IMG_0453IMG_0491The dark grey blue of cloud bellies move slowly east, sheets of rain stretching out, connecting sky to earth.  Thunder lumbers and bellows.  Rain hits hard on the roof.  A flash of lightning.  Quiet.  The storm moves on and the sky opens to blue.  To the west, to the south, the sun glints on the Spanish Peaks illuminating their vertical striations of rock and ridge, Beehive bright tucked behind.  Then shrouding of white, thin wisps of rain stranding from grey to light in the evening sun.

More thunder, cracks of power break open overhead, the darkness of more clouds heading this way.

“I don’t know how to do this,” I say to Dr. Cooper with a restrained wail in my voice, “I guess you have to just live each minute.”  There is always the before and after, a thousand points marked off, striating, separating then and now, what was, what is.  Eventually the “what will be,” becomes the “is.”  A hundred thousand test results, countless days and hours and minutes for the heart to beat hard with suffocating thud, anticipating the blade coming against your throat.  The wave rips you off your feet, dark weight pressing down on you, flailing, desperation to right yourself. Gasp of air and crashing wave grinding you down again and again.

Quiet.  Eery, odd, quiet.  Calm.  Flat face.  So this is how this goes.  This is how minutes amass to hours and days, months into years.  So this is how death comes.  This is how the thievery of your child’s bursting life gets stripped away, paint ripping in shreds from boards exposed too long in harsh weather, the slow erosion of flesh, the silent march of invasion.

Dr. Eagan, the PI (principal investigator) of the WT1 T-cell trial said Allistaire’s chloromas just amounted to too much disease to have hope that the T-cells would be successful, at least at this point.  In addition to the 6-7 chloromas in her spine, sternum and pelvis seen on the last PET/CT, four out of two hundred cells tested from her bone marrow aspirate showed Allistaire’s MLL (Multi Lineage Leukemia) mutation according to FISH (Fluorescence in situ hybridization).  The Flow Cytometry test showed 0% detectable leukemia in her marrow.  There was not even enough disease in the chloromas for corresponding masses to show up on CT.  Only about 5 years ago there would have been no detectable disease anywhere – there was no Flow Cytometry and PET scans weren’t used for leukemia.  Even a year ago Allistaire had never had a PET scan, only CTs to look for chloromas.  We would all think she was cancer free, in remission.  That was then, this is now.

Since we couldn’t move forward with the T-cells with any hope of success, the goal is to see if we can get her in a better spot.  Her heart is still far too weak to endure any intense chemo.  The accumulation of hard chemo has killed muscle cells in her heart that will never be replaced.  They are dead.  There is nothing new to replace them, only the hope that the surrounding cells can compensate for their loss.  The very weapon wielded against her cancer has cut her through, has permanently wounded her.  This is why there is no transplant on the horizon.  It is for now, off the table.  There is no plan to move forward with a transplant.

So Dr. Cooper, after much thought and consideration recommended the course of treatment that we have chosen to pursue.  She began five days of Decitabine last Friday which will be followed with three doses of Mylotarg (generic name: Gemtuzumab) on days 6, 9 and 12 of this round.  Gemtuzumab is an antibody which is bound to the chemo molecule, ozogamicin, which then binds to the CD33 antigen receptor on the cell surface of myeloid cells (which is the cell line that is cancerous in Acute Myeloid Leukemia).  Once the Gemtuzumab antibody binds to the CD33 antigen, the whole molecular complex moves inside the cell where the cytotoxic molecule, ozogamicin, kills the cell.  “Calicheamicins (of which Ozogamicin is a derivative) target DNA and cause strand scission. Calicheamicins bind with DNA in the minor groove, wherein they then undergo a reaction analogous to the Bergman cyclization to generate a diradical species. This diradical, 1,4-didehydrobenzene, then abstracts hydrogen atoms from the deoxyribose (sugar) backbone of DNA, which ultimately leads to strand scission.[6] The specificity of binding of calicheamicin to the minor groove of DNA was demonstrated by Crothers et al. (1999) to be due to the aryltetrasaccharide group of the molecule.”  I included that last bit from Wikepedia because I love the wild intricacies of our flesh.  And because I’m sick and tired of people offering me simplified cures for cancer.  Essential oils do not cure cancer. Juicing doesn’t cure cancer.  Cancer is a beast of a million, trillion heads with thousands of faces ever-changing, mutating, hiding and lunging out again to strangle the life out of you.

If you read about Gemtuzumab, you will see it has a dark past and was pulled by the FDA in 2010.  Allistaire is actually only able to get it on a compassionate use basis.  However, questions about the trial that caused alarm over its perceived toxicity and lack of efficacy, have shown that it may not have been the right move to pull it.  It has remained available in Europe and more recent trials have shown promise.  Allistaire will receive her first dose this Wednesday.  The primary concerns are immediate allergic responses like anaphylactic shock which she will be pre-meded with Benadryl and longer term concerns for her liver including VOD (Veno Occlusive Disease).

….That was Monday, today is Saturday.  In the week preceding Monday, Allistaire, Solveig, Sten and I drove east on I90 all the way home to Bozeman.  Dr. Cooper supported us going home for a visit – Allistaire’s first time home since she left in October.  Sten took the girls to clinic on Wednesday morning, July 1st so I could pack without them knowing in case labs were bad and we’d be thwarted at the last moment.  But labs were fabulous and when the girls opened the door, Allistaire asked why all the bags were packed on the floor.  “We’re going home to Montana for a visit, sweet girl.”  She was beside herself.  She couldn’t articulate her amazement and joy.  I’d say she was flabbergasted and it was the best.  I loved that joy.  After staying the night in Spokane as we have done so many, many times we continued on east through a land that all cells of my skin, eyes, hair, fingernails all sought to soak in, like dear friends with whom you have long yearned to visit – blue of Lake Coeur D’Alene, marshy grasslands before Cataldo in Idaho, my great big hill I plan to climb one day – a hill already turning yellow in summer’s heat but great and white in winter’s cloak and shocking purple in spring with billions of flowers of a name I don’t know, that curve of rock that repeats pinks and purples of setting suns, a great boulder over green water – a swimming hole I imagine diving into its cool deeps and drying out in the warmth of the rock, tumbling great rounded groupings of rock like a Flintstone landscape over Homestake Pass, the river bottom with Cottonwoods in Whitehall and up that great curve of road that will soon bring my eyes to rest on the Bridgers in the distance – the mountains that are mouth to my home, to Kelly Canyon with its aspens, Rocky Creek, Bridger Creek, magpies and coyotes, black bears and deer, scores of red-winged black birds calling their eery beautiful cry in morning and evening, pairs of sand-hill cranes who sound as if they have mistaken Montana for Africa.  There a multitude of colors of grass like waves moving in the wind over the contours of the land, punctuated by the silvery blue of sagebrush, that wondrous smell of moist coolness of night soaked up in their leaves and released like blessing.  At long last we were home, home.

Every joy paired with splitting pain.  The familiar strange smell of our house built in the 70’s.  Waking to light on the Spanish Peaks, light on leaves and flowers and the great evergreens on the hill, piercing blue of summer sky.  The feel of smooth tile underfoot as I stumble to my bathroom at night – no handicap bar just lush toilet paper.  Spying Allistaire sitting on her closet floor playing with her toys in the morning, her sweet blonde head ascending the stairs to greet the day.  Birdnest ferns and mother ferns, variegated leaves and leaves pink, leaves with purple, plump sculptural succulents and fuchsia of orchid petals, light broken in pieces of rainbow color by the prisms in the windows, the delectable breeze moving up the canyon and occasional ring of wind chimes.  Sitting down together for pancakes, four in a row along the kitchen counter.  Sending laundry down the shoot, into the wash and taking it out to the line to dry in the already hot day.  When I went into the garage I broke down.  Fishing poles and life jackets and bikes and buckets and pairs of little shovels and bug catchers and gardening gloves with childish patterns, hiking boots and a bike rack – a life once lived.  A life stalled.  A life paused.  A life cut short?  I think of going to Cliff Lake last year and my heart breaks open.  How desperate I am for the smell of campfire and the negotiation of how many marshmallows are reasonable.  I pant for Hyalite, for the simple extravagant pleasure of driving up that road and seeing water ringed by mountains, of packing coolers for picnics and the heft of a pack on my back as we ascend through the forest.  I watch the girls out the kitchen window, they head to the thicket of bushes where they made a fort last summer, the little blue bucket having finally been removed from the branch where it hung for months.  They play long with a caterpillar, lovingly making it a home to enjoy and hit jackpot when I find what I told them was a baby mouse, but I now think must have been a vole.  They carry it back and forth with gloved hands, tender in their care and wonder.

We had a wonderful week all together and time with family.  On her last evening home, we celebrated sweet Per’s third birthday.  Allistaire rode the tricycle in her yellow dress with great blooms – a french girl’s dress.  Up and down the sidewalk she went.  At last it was time to say goodnight, but not just goodnight, goodbye.  And I watched as simple hugs and goodbye’s were exchanged and suppressed the desire to cry out, to yell – “do you not realize you may never see her here again?”  Every joy sat side by side with the fear that these days would never be again, that I was witness to the lasts of many things, things simple, things mightily beautiful, treasured beyond all else I possess.  Next to the image of her yellow dress and happy face in the waning light sat deep sadness that she was alone, no one to play with, a child who has so seldomly been able to play with her peers, with really any children at all.  The older two, Solveig and Haaken, were off on their big kid adventures and Per was enamored with the little neighbor girl.  Next to the image of her that night, an image of seeming lighthearted joy, sat images of Carly’s face with tumors bulging, pressing tight and purple and shiny taut against the skin, eye distorted.  I saw Benton’s face deformed by numerous tumors that contorted his features.  I saw his face laying in a casket as I filed past, tears streaming.  I knew I had seen something that terrified me.  Something I wanted to ignore, to disregard, to cover with more plausible explanation, but I turned back to it over and over and over, examining, questioning – what do I see there?  Something seems off.  Her right eye, something is not right, something is not normal.  What is it?  What am I seeing?

Sten drove her back to Seattle on Thursday so she could begin chemo on Friday.  He came to Allistaire’s appointment with Dr. Cooper with a list of questions I had, questions with answers relayed and more questions lobbied back.  Nestled in amongst the questions of did we really know if Allistaire’s cancer expressed CD33 and how do you know how many days and on what days to give Mylotarg, was the question, do you see something off with her right eye?  Yes, ptosis, a droopy or falling eyelid, an effect on the muscles of the eye.  Sten’s voice on the phone, “He ordered an MRI.”  “Oh God, why?  What is he thinking it might be?”  Later Dr. Cooper and I talk on the phone and he was concerned.  It could be a tumor pressing on nerves in her spine or in her brain.

For days Solveig and I were alone.  Just the two of us.  Just like old times.  Times when she was my little buddy and we went everywhere, just the two of us.  How dear she was to me, how overlapped with my life.  Then I had a miscarriage, a DNC, months of trying to get pregnant again, fear of miscarriage all over again.  Sorrow, fear, acrid poisons seeping into the crevasses of my heart and mind, weighing down my finger tips and shoulders.  Sober.  A turning.  I couldn’t laugh as easily.  Other private wounds and weeping added one to the other, layers pressing down.  Desperate cries to the Lord, a turning to the Lord like never before.  My first tastes of Christ as my very life, Christ the very fuel of my cells, the brightness of my eyes, my longing, my aching need for Him and the sweet, sweet knowing of really tasting the beauty of the Lord.  Sober.  Deep expanses opening up, being broken open down into the very core of myself.  A fundamental tearing, sinews strained and snapping, bleeding out, faint.  In these four plus broken years I’ve felt too weak to love Solveig as she deserves, as I long to love her and gosh, oh man do I love that girl.  I hunger for her eyes, her giddy laugh, her brown ringlets she desperately wants straight, her skinned bruised legs from play, the magnetic irresistible draw of books, of stories for her budding mind, her unstoppable creativity, the ever request for a back rub.  I love Solveig Kailen Anderson and I have missed that girl.  I have missed so much of her life because of all this with Allistaire.  When she was only as old as Allistaire is now, we sent her to Montana to live with her grandparents while I fought alongside Allistaire in the hospital.  The first relapse meant 8 months away from home and four plus more months of constant week-long trips back to Seattle.  This relapse it’s already been 9 months with no end but the worst in sight.

For three weeks I had the joy of being with Solveig, the most time I’ve spent with her in all these nine long months.  When at last Monday came and loomed as the day I would lay down to sleep knowing something more, something of that eye, I talked with Solveig.  I attempted to prepare her for what may be coming.  Dr. Cooper called around 5:30pm.  It’s not in her brain, but there is a 2 1/2 cm mass of leukemia in her right sinus.  It has begun to erode away the bone.  The tumor, the chloroma, is putting pressure on the muscles which operate her right eye, that’s why it doesn’t look right.  Right there.  Right there smack in the middle of my little sweet girl’s face dwells an insidious tumor that threatens to take more, to distort, to ravage, to gnaw.  There is also a very small one in her left sinus.  Dr. Cooper knows of children in which the leukemia eats away the bone into the brain.  Why Lord?  Oh God please, please don’t take her this way.

With shoulders slumped I came to face Solveig, to tell her this latest revelation of the onslaught of Allistaire’s disease.  I asked her, gently pleaded, be kind to your sister.  You don’t know how many days you may have with her.  Don’t fight over toys.  Treasure her, for one day we may have no medicine left to stop her cancer.  One day we may need to bring her home to this house to lovingly surround her as she dies.  I tell Solveig that she will not be the same girl she once was.  She may not be able to walk.  Her face may be distorted with tumors.  Her eyes may not work.  Will she be able to speak?  The imaginings are so brutal.  It just ravages my heart to imagine this for her.  Oh God it hurts, it hurts so bad.  Solveig is silent and then sobs heave and tears stream.  I hold her close and grieve time lost and a possible future without her sister.  How I so loved the thought of two sisters growing up together.  Solveig by herself, just another sorrow, another gaping wound.

The thing is, I can see on the other side of these brutalities.  I can imagine a life filled with joy.  I can imagine being close to Solveig, years ahead together.  I believe that there would be a day far off in the future where losing Allistaire wouldn’t decimate every day.  But to get there, to walk the possible road ahead, oh how overwhelming, how utterly horrid.  It is like facing the blackest tunnel, believing that it will eventually open up to light, but Oh God, how far, how long?  You think, I can’t do that Lord, I just can’t bear the loss of my sweet little girl – you think this is some sort of barrier to it actually happening.  I look at her little face, with that one eye askew, having many, many times a day to face that beast that is taking her.  I love her.  My whole flesh cries out – I love her TOO much!!  I just can’t lose her.  But neither is my love sufficient to hold her.

For twelve days, I soaked up Montana.  I brought my bike and at long last made friends with it.  I actually now crave being able to get on that seat, feet clipping easily into the pedals and heading out onto the curves of my dear Kelly Canyon.  I imagine the many adventures that bike opens up to me.  Morning after morning I went out into the land with vast expanse of sky opening up overhead.  Glory.  Absolute resplendent beauty.  My sweet mother-in-law, JoMarie, so generously gave me her bike, an orange bike, a bike built for Obliteride, a bike to carry my flesh into God’s wondrous creation and a means to raise money to heal the sick.  I had a fitting done at Bangtail Bikes in Bozeman and then it really became mine – it is now aligned to my body, to my outward self, propelled by the inner.  Then Wednesday morning, as the first light shone blue behind the Bridgers, Sten took me to the airport.  We embraced hoping not to see each other before planned in August, desperately hoping some new horror would not rise up in the next few weeks.  Back to the battlefield, back to a strange life of seeming ease where I regularly drink Starbucks and sit around, but just below the surface, if you have eyes to see, is an effort of epic proportions, an unyielding fight, a straining, a grasping for life.

I returned to Seattle on Wednesday morning because Allistaire had an echocardiogram and cardiology appointment scheduled in addition to her first dose of Mylotarg.  I went straight from the airport to Ron Don to drop off my suitcase and then walked as fast as I could to the hospital to make it in time for Allistaire’s labs.  How strange to wake in my bed in Montana and so suddenly and utterly cast into a different world.  The best news of the day was that Allistaire’s heart has gotten a wee bit stronger!  Her ejection fraction rose from 29 to 36 and her shortening fraction from 16 to 21!  It felt like finally being able to breathe a bit.  But blast, just as we’re making some progress with her heart, her cancer is on a rampage, spreading in terrible places with still not much to combat it.  Later in clinic she received Tylenol and Benadryl as pre-meds for the Mylotarg.  Allistaire promptly fell asleep for the next four hours while I finally had a bit a lovely down time.  Thankfully she had no reaction to the infusion and all seemed well.

After ten hours at the hospital, we finally made it back to Ron Don and I was straight worn out, having gotten up at 2:30am Washington time.  Having slept so long, Allistaire completely missed lunch and now I had only a short bit of time to get dinner and meds in her.  On top of it, about 8:30 that night, I noticed she felt hot and the thermometer read 102.6.  Well, they were expecting this right?  This is why I was given a third dose of Tylenol to give her as instructed at 9:30pm.  The truth was I was wiped out and dreaded the fiasco of having to call the Hem/Onc Fellow to report the fever which I knew would result in being sent to the emergency room for blood cultures and possibly admission and antibiotics. Dr. Tarlock had warned me on Tuesday night that she may need to be admitted on Wednesday since her phosphorous and potassium were rising, signs of tumor lysis.  She may need to be monitored, but her labs had improved on her own and we had skated by.  But not calling in about the fever was a major failing on my part, really a huge mistake for any parent of a child with cancer.  We finally went to sleep after she threw up a wretched medicine twice – a medicine meant to bind with potassium.  I already had a laundry bin full when she had diarrhea twice as well and I had to change the sheets.  In between all the wakings that night, I continually took her temperature and watched it steadily descend to normal.  It was just because of the Mylotarg I told myself.

We were back to the hospital Thursday morning at 8am for electrolyte labs.  So here’s the deal, when chemo destroys cancer cells, the cancer cells lys – they die and break open spilling all their guts into the blood stream.  This is tumor lysis and it is detected by rising levels of potassium, phosphorous and uric acid.  It becomes dangerous when these electrolyte levels rise steeply, beyond the limits of what the kidneys can process.  Then you see the creatinine and BUN (Blood Urea Nitrogen) levels rise which indicate injury to the kidneys and the potential for kidney failure.  High levels of potassium can also cause arrhythmias of the heart.  So when Allistaire’s labs results returned this past Thursday morning, it was game on time.  Dr. Tarlock and Dr. Cooper were amazed to see overwhelming evidence of tumor lysis with all levels skyrocketing.  We were going to be admitted.  Then the plan intensified with measures being taken to have an Interventional Radiology surgeon install a second central line into Allistaire with the aid of Cardiac Anesthesia for the purpose of her beginning short-term dialysis immediately.  The goal was to respond quickly to this acute kidney damage and prevent kidney failure or long-term kidney damage by taking all of the burden off of the kidneys.  Because of Allistaire’s heart failure, her heart would not be able to endure the huge amounts of fluid that would be necessary to help the kidney’s flush out these electrolytes.  And because the kidney’s were already hurt, they could not endure the assistance of Lasix to remove the fluid.  So really, dialysis was the best option.  By 3pm we were once again in the ICU, this time in Forest level 5 room 321, exactly one floor down from where we spent 80 days in the ICU before.

In the time we waited for everything to be arranged, Dr. Tarlock consulted with cardiology about how much fluid Allistaire could handle on her own and she began receiving just 60ml an hour of saline.   To lower Uric acid levels, she was given a dose of IV Rasburicase.  She was also given Sevelamer to bind with phosphorous.  The problem is, Sevelamer can only bind with phosphorous in the gut, not in the blood stream.  Because Allistaire’s phosphorous was so high, Dr. Tarlock feared this would not be enough and we would need the aid of dialysis.  At last we were settled in our room in the ICU.  Yet when the labs drawn at 2pm came back, everything was trending in a much more positive direction due to the interventions already taken.  About ten minutes into a fascinating conversation with the Interventional Radiologist about collateral veins that a young body like Allistaire’s form when other veins are damaged, the ICU attending came in to say we were going to hold off on dialysis for now and continue to monitor labs.  It ended up being a crazy short and remarkably easy ICU stay.  Basically Allistaire just watched movies, got her meds and some IV fluids while I tried to get food in her and grumbled that I couldn’t eat in the room.  Because Allistaire was scheduled to get her second dose of Mylotarg on Saturday, we were just going to stay inpatient through Sunday with frequent labs to quickly deal with any issues if they should arise.  Friday morning we were to transition upstairs to the Cancer Unit except that they had no rooms available.  Finally on Saturday afternoon, we moved upstairs to the Cancer Unit into the radiation room – a room specially designed to give MIBG radiation to neuroblastoma patients.  It is a lead-lined room with most surfaces being stainless steel.  It’s not the most cozy room and the bed is about a foot to short due to having to accommodate the thicker lead walls.  But it meant getting the show on the road and I didn’t care.  I just wanted to get the Mylotarg in and get out of the hospital.  At long last, on Sunday afternoon we burst out of the hospital into the blaze of a 95 degree day, having completed the second dose of Mylotarg with absolutely no issues, no fevers and labs still looking great.

Yesterday, it was back to the hospital for labs and possible platelets.  I was pretty sure Allistaire would need them because of the small purple pricks of petechiae (tiny broken blood vessels) mixed in like a new wave of freckles on Allistaire’s cheeks.  A single round purple bruise adorned Allistaire’s forehead right between the eyebrows like some new-age tilak mark, in this case having bonked her head on the bar of the Target cart which she was eagerly driving when it rammed a shelf.  Sure enough, her platelets were 5 and so we spent the morning at the hospital getting her all tanked up.  Today we head back into the hospital again for labs and her third and final dose of Mylotarg.  Tomorrow, yet again, for the twelfth day in a row, we will be in the hospital for her clinic appointment with Dr. Cooper.  From there…well, we wait for her marrow to eventually recover, hope no infections get her and eventually plan to do another bone marrow biopsy and PET/CT to see how things worked.  After that?  Who knows.  If she were miraculously clear of cancer, we might be able to proceed with the infusion of modified T-cells (this is not a transplant).  If she has a partial response to the Mylotarg, it may make sense to try another round of it.  If there is no response or her disease has progressed, well, it all depends…of course we would investigate all our options for other treatment or the woeful possibility of being done.

Honestly, the next several weeks terrify me.  Obliteride is coming up – only 17 more days.  I wonder what life will look like as I ride that day.  By the way, I reduced my route to the 25 mile because I just haven’t had the time to train as needed to make the 50 mile enjoyable.  Three years ago on the afternoon before Obliteride, I was told that because Allistaire had disease after transplant, that she had a mere 5% chance at survival and probably wouldn’t even live 6 months.  I was decimated, inside and out, that day as I rode on my old mountain bike.  Last year, I physically had a hard ride, not being prepared for the 50 mile, but was propelled with determination to finish in light of all the pain and hardship Allistaire had endured.  But I rode that day with hope – having had Allistaire declared cancer-free only two months prior.  This year, who knows.  These are very scary times.  The Obliteride folks had invited Allistaire to be part of the Friday night kick-off party, but as her disease has progressed, I’ve had to say no to this, not knowing where things will stand on August 7th.

A little girl, Melissa, that I knew through friends, died of AML a week ago.  Last night, my friend Kiesha and I talked as she got back labs in Missoula.  It looks like Stevie has once again relapsed with AML and they will head back to St. Jude’s today or tomorrow.  As I was praying for her yesterday, knowing she was trying to get labs because of all of Stevie’s bruises, I put myself back in that place of waiting for news of possible relapse.  You have at long last returned to the magnificence of a “normal” life.  You gaze at your child in a way that no parent of a healthy child can fully imagine – your whole self rejoices at the smallest normalcies, ordinary becomes spectacular pleasure.  But when signs creep in that something is awry, the stinging is fierce and unrelenting.  It is like watching a black storm on the horizon, you see it coming and you know it is about to engulf your life and twist and spin and splinter you and your beloveds until at long last you are spit out on the ground, broken, with the life pummeled out of you.  It is a tsunami that sweeps you away from your life in an instant and you are put back in that place of fighting every day for life.  To just simply live is all you want.

I long for a better way.  I long for a day when cancer isn’t a ravager, a likely sentence of death.  I long, oh I ache, for a day when the way you fight cancer doesn’t cost so much life and destruction of beautiful body parts like ovaries, and hearts and brains.  I see my child.  I see the children of my friends.  A few have been released back into glorious life, but many stumble around from the horrific effects of radiation to the brain, limbs cut off, hearts faint, and some in caskets.  Cancer is the number one killer of children by disease!  I have asked many times, and I will ask again.  There are so many, many worthy places to invest your resources, your money.  But I am asking if you would consider giving it to further cancer research?  One in two men and one in three women will get cancer in their lifetimes.  You may be the one desperate for a better way, and if not you, it is almost certain that someone dear and close to you will be aching for a better way to eradicate, obliterate, cancer from their life.  Cancer is personal, it comes in close to each of us.  Will you join us in putting our resources to stopping this foe?  One hundred percent of all the money given to Obliteride directly funds cancer research at Fred Hutchinson Cancer Research Center.  Do you live in Bozeman?  Do you know that the Cancer Center at the hospital is part of the SCCA – the Seattle Cancer Care Alliance which is a collaboration of Fred Hutch, the University of Washington and Seattle Children’s?  Giving to Obliteride directly opens doors for clinical trials that you in Bozeman may need!

Thank you SO much to the over one hundred different people/couples/groups that have already given to further cancer research in my name through Obliteride!  Yesterday, you helped me surpass my goal of $15,000.  But I know there are many of you still who profess your love for us, your desire to support us in any way, who have not yet given.  Would you consider honoring Allistaire’s fight in this way?

Click HERE to donate to Obliteride and directly speed up cancer research!

The research is taunting.  It is moving at such an amazing pace, but I often fear Allistaire will just barely miss the thing that would at long last put down this beast of cancer.  You don’t want to hear it.  You think I’m crying wolf.  And oh how I long for you to be right.  I long for the Lord to once again make a way through for Allistaire.  I know, I absolutely know He is able to heal her.  I listened to the Nigerian woman tell me to pray, to fast, to believe, to test the Lord and demand He heal her as she has done for her son who is getting a transplant for Sickle Cell.  She proclaimed her faith in the Lord’s ability to heal, over and over and over.  But that seems too simple to me.  I just don’t believe in some magic equation where enough people pray or my faith is somehow the right degree of strong and then out pops what I want.  God is too big for that.  He is too vast and complex and when it comes down to it – He is just OTHER than me.  He is utterly “other’ and His ways are not my ways.  I don’t begin to know how my little life and my little child are woven into His great plans.  But the thing is, I do, I do believe they are part of the bigger picture.  I don’t believe our “littleness” equals lack of significance.  And what is the purpose of my life, of Allistaire’s?  Is it not our great joy, fraught through with pain, to direct attention, to illuminate more the beauty of the Lord?  God does not need more glory.  He is not some pathetic being needing me to build Him up.  No, WE need to see the glory of the Lord!  We humans need to see Him for who He is that WE MAY LIVE!  That is why I yield my life to the glory of the Lord – because I love, because I know my own great need to be engrafted into His life blood, that I MAY LIVE!  And not just live, but live an abundant, eternal life.  And in turn, I am honored that my life may in some small way direct attention to the radiance of Christ as the only source of life!  May I be so audacious as to link my life to Christ’s?  Is this not exactly what Christ did on an epic scale?  He suffered and He laid down His life that life might spring up from His death!  This is the “otherness” of God!  Out of Christ’s death, the ground soaked by His blood, God overcame sin and death!  He resurrected the life of Christ and in so doing made the way for redemption!  Is there anything more wondrous, more mind-blowing, more exploding with glorious beauty than this?  THIS is what I am invited into!  In my own power, this awful road with Allistaire is just suffering, is just agony, is just death. But God is at work!  He is alive and HE will take this heart of mine bleeding out as He may not remove this cup from me and He will accomplish life!

I lift my eyes to these wonders.  Sometimes I am too frail and weak to even open my eyes and I need the Lord to come down low and tenderly care for me.  I went to church with Jo in Bozeman and heard God’s word preached for the first time in a long time.  I was reminded of God’s otherness. I was reminded of the way He blasts my rational understanding to pieces and shows me a better way, the way of life.  I could hardly sing the worship songs.  I just cried.  I cried because the last time I was in that place was to honor Jens’ life and to mourn his death.  I cried looking at the man playing the drums, wishing so desperately it could still be Jens.  I cried because the words of those songs were just too much.  “There may be pain in the night, but joy comes in the morning.”  Oh Father, oh Father, how long is this night?  The joy seems ever so far off – is there even a glimmer of light on the horizon?  Words about how our life is not our own, how we give it to the Lord.  That sounds nice.  You can agree to that right?  Your life is the Lord’s.  How lovely.  You sing it out with beautiful voice.  Sobs fill my throat.  Oh God, oh God, I do yield, I do lay down at your feet, but it is agony, it is ravaging, it feels like brutality.  I cry out with Christ.  My God, my God, why have you forsaken me?  But I am given light on the horizon, the smallest hint of turning, I am given hope that this night will end.  I read in God’s word beyond that black moment on the cross.  I read of resurrection, of redemption, of light unyielding.  I stake my life in the hope of God’s promises.  I have tasted of the Lord and I will not turn back.

Where shall I go from your Spirit?
Or where shall I flee from your presence?
If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall lead me,
and your right hand shall hold me.
If I say, “Surely the darkness shall cover me,
and the light about me be night,”
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.  (Psalm 139: 7-12)IMG_0391 IMG_0403 IMG_0411 IMG_0418 IMG_0428 IMG_0441 IMG_0447 IMG_0449 IMG_0450 IMG_0452 IMG_0456 IMG_0465 IMG_0468 IMG_0469 IMG_0470 IMG_0479 IMG_0480 IMG_0481 IMG_0511 IMG_0521 IMG_0524 IMG_0530 IMG_0535 IMG_0539 IMG_0541 IMG_0543 IMG_0548 IMG_0549 IMG_0551 IMG_0555 IMG_0562 IMG_0565 IMG_0574